Psoriasis That Is Challenging to Treat

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When psoriasis is severe and widespread, or on areas like hands, feet or the scalp, treatment can be extremely challenging and even unsuccessful. Where do you turn if you have tried everything?

Our guest, Dr. Jami L. Miller, director of the Vanderbilt University Medical Center Phototherapy Center, talks about the types of psoriasis that are the most challenging to treat and why. You'll also learn about new approaches with existing treatments and how to cope with the emotional issues that accompany severe psoriasis.

Psoriasis: An Immune System Disorder

Dr. Miller:
Psoriasis is a disease that affects the skin, including the nails, sometimes the hair, and the joints, and the main problem with the skin is it is growing too quickly. In some places it's growing two to three times, and sometimes even ten times, more rapidly than on the areas of skin that don't have psoriasis, and that's why you see these thickened areas that may become red. The skin doesn't quite mature properly as it goes up through the layers of skin to reach the surface of your skin, and that's why it's red and scaly.

It's been thought for centuries to be mainly a skin problem. The treatments that have been used for centuries - such as sunlight, ultraviolet light and treatments like these - that we know damage cells have been aimed at trying to make the skin quit growing so quickly. Even the oldest treatments, like arsenic and mercury back in Roman times, were used to try to make skin quit growing so quickly. But it's been interesting that in the 1980s and '90s, we noticed that drugs that decreased the activity of the immune system were spectacularly effective in treating psoriasis. And we understand now that psoriasis is a disorder mainly of the immune system and not of the skin, at least not as much as we thought that it used to be.

We know that it is the T cell in the skin or that particular part of the immune system that seems to be the most commonly affected in psoriasis patients. The T cell is too active, and it tells the skin cells to overgrow. Also there are some chemicals T cells make called cytokines, in particular tumor necrosis alpha, and things like gamma interferon that also seem to be in too high of a supply that cause those skin cells to divide too rapidly.

I should probably mention that there is at least some part the skin that's at fault too, and we do know that the skin cells in patients who have psoriasis are primed and ready to grow quickly. So although there is probably some element of the skin itself that's abnormal in psoriasis patients, we think of it now as being a problem with the immune system.

Mild Psoriasis Versus Severe Psoriasis

Dr. Miller:
Mainly, severe psoriasis has the same symptoms mild psoriasis, only compounded. So we see big red spots that are often very thick, and we call those plaques. They are usually very scaly, and they get this characteristic white- to silvery-colored thick scale on top of them. And when they are scratched they usually bleed because you see capillaries very high up in the skin as well. And in fact if you have psoriasis and you have skin that does not have psoriasis, and you scratch it, a lot of the times psoriasis will come up in that area. That's called the Koebner phenomenon.

When you have severe psoriasis, we just think of it as being even worse. It itches. In fact, psoriasis is from the Greek word "to itch." It burns. It stings. It hurts. It scales. People have to constantly vacuum up after themselves. It bleeds. And severe psoriasis just does that even more.

What Makes Some Psoriasis Difficult to Treat

Dr. Miller:
I think most doctors and patients agree that psoriasis in the nail is the hardest place to treat. You can have psoriasis over your entire body and have a treatment that's very effective and every bit of your psoriasis goes away except your nails will still be thickened, crumbly and sometimes tender. And some nails will just get pitting. Sometimes they will just be discolored, but really thickened nails that get crumbly can be very difficult to treat. Psoriasis on the hands and feet also can be very difficult to treat. They are areas of very thick skin anyway, and getting that to go down can be very challenging. The scalp is another area that can really be difficult to treat, and then the genital areas sometimes. Those really are not very responsive to your usual treatments.

There are some people that have psoriasis head to toe that goes away quickly with just sunlight. And then others who have one spot on their scalp that just won't go away no matter what, so it varies sometimes. The thicker the psoriasis, the harder it is to treat, but it's really highly variable.

The Percentage System for Classifying Severe Psoriasis

Dr. Miller:
The classical classification of severe psoriasis is if more than 10 percent of your body surface area is covered with psoriasis, that is severe. Now, remembering that one percent of your body surface area is the size of your palm, if you have ten palms worth of psoriasis, we think of that as being severe. But you have to take everybody individually. For example, if you just have psoriasis on your right hand, and you are right-handed, that's only one percent of your body surface area, but you can't function well, and anything you do hurts, so it's a problem. When you have psoriasis on the face, that may not be very much of your face covered, but people are asking you what's wrong with you. It can be very socially embarrassing. So we think of severe psoriasis as being either 10 percent of the body surface area or if it's in a place that's functionally very sensitive. About 10 percent of people with psoriasis have severe disease and about 25 percent have moderate disease, and sometimes moderate psoriasis can be very difficult to treat as well.

When Psoriasis Treatments Don't Work and Other Barriers to Therapy

Dr. Miller:
I break difficult-to-treat psoriasis down into two groups. First of all, are the people who have psoriasis that I have treated with all the usual things, and their psoriasis is just is not getting better. The others are those who have psoriasis that might not be that difficult to treat, but they have other things going on so they really can't take most of the medicines that we usually use for psoriasis. For example, patients who have liver disease can't use methotrexate or a couple of the other medications that can affect the liver. And for people who have diabetes, you have to watch certain medications. And the sad thing is that in America, at least, there are some issues with insurance that can make your psoriasis difficult to treat, like insurance not covering expensive treatments.

You will actually have some people who are doing absolutely wonderfully on one medication they have used for six months and all of a sudden it's not working. There are a couple of medicines that are famous for that happening. Particularly the TNF (tumor necrosis factor) inhibitors tend to lose their effectiveness over time. But then the patient may get on another medication that makes their psoriasis worse. Or they may just get an infection that makes their psoriasis worse. So it's variable. You do have to individualize things.

Treating Low Self-Esteem or Depression Caused by Psoriasis

Dr. Miller:
First of all, I talk to my patients and help them to know that I really do understand that this severe psoriasis is devastating their lives, that this is not just a skin disease that should be lived with and that we are going to do our best to treat it. And I also tend to be very aggressive in trying to get it under control.

The other thing I do, though, is try to hook them up with the various foundations, and there are things like this webcast that help them to understand a little bit more about what's going on. I really do think knowledge is power when it comes to dealing with psoriasis. And so the National Psoriasis Foundation does an absolutely wonderful job with helping people through newsletters, through support groups. There are local chapters of the Psoriasis Foundation, and there are national meetings that help.

And then I encourage them to get some more information on the Internet, too, and come to understand what our options are, that most of the time that we can do an adequate job of controlling their disease.

It really can be very frustrating, because although we have a lot of treatments for this, unfortunately we don't have a way of looking at a patient and saying you have this kind of psoriasis and this treatment is going to take care of it. And so I try to help them understand that right with our first meeting. Especially if they have very severe psoriasis, I will say, "I think we are going to start with this treatment, and I think it's going to help you, but if it doesn't, we have got a lot of other options." And I keep reminding them of that as we go through various treatment options.

Psoriasis Treatment Plans Often Start with Topicals

Dr. Miller:
For treating psoriasis, probably the thing that you need to consider starting with the most is plain old moisturizers. Psoriasis skin is dry skin and scaly skin, and the first step along the therapeutic ladder is to moisturize it. And I like a nice thick moisturizer, even to areas of your skin that do not have psoriasis. I really like them to be well moisturized.

Then the most common initial treatments with psoriasis are the topical treatments, the creams and the ointments. There are a lot of them, and the most commonly used ones are the topical steroids. Some names that you might recognize are hydrocortisone, triamcinolone (Kenalog), fluocinonide (Vanos), clobetasol (Temovate) things like that. In general, your doctor is going to like a greasy ointment better than a cream because it moisturizes better, it tends to be more effective. And some patients love the ointments. But other people, especially if you have psoriasis over large parts of your body, do not like the ointments and would rather have the creams. So steroids tend to be the number one topical.

Then there is tar, which has been used since ancient times and really does work very well especially for localized, small areas of psoriasis. Its drawback is that it tends to smell, especially in the higher strengths. And it's kind of messy. It can stain things. But for very severe, especially hand and foot disease, it does tend to work very well.

And then there are the vitamin derivatives. There is a vitamin A derivative called tazarotene (Tazorac) that works very, very well in a lot of cases, especially to get scaling off. There is vitamin D. It's sold in the United States under the name Dovonex. That does very well. There is a very old treatment called Anthralin. And then there are some of the exfoliating agents, like salicylic acids, that are very helpful. Those are all topicals, and they can come in shampoos and other things for the scalp.

The second thing you can do, especially if there is just a spot or two, is inject the areas with medicine, usually a steroid. We call that intralesional steroid treatment, and if you have just one spot on your arm that won't go away, I do like to do that. There are some doctors that will inject a whole lot of areas, and sometimes I do that, but it gets to be a little painful. Injecting the nails with steroids is very, very good treatment, but man, does it hurt.

Then we think about light treatment as being the next step. And the sun, this is the one time that a dermatologist will tell you that it's okay to get out in the sun, if you have got psoriasis. We tell you not to get sunburned, and we do realize that the risk of that is getting a skin cancer, but it really does work very well, especially in the summertime, for psoriasis. And you can get treatments in phototherapy centers, such as ultraviolet B, usually narrow band or broad band UVB. Then there is a treatment called PUVA where you take a pill and then get into a light box, and that is very effective. That is actually spectacularly effective for most psoriasis, but the drawback is that you usually have to come in for those light treatments three times a weak, and that just takes time out of one's schedule.

Sunlight, Tanning Beds and Light Therapy for Psoriasis

Dr. Miller:
It's probably mainly the UVB (ultraviolet light) in sun that improves most psoriasis, so I tell people go out without any sunblock for about 10 or 15 minutes, really get that UVB, and then put on your sunblock and go enjoy yourself for the rest of the day.

And I should probably say here that in general tanning beds are not very effective. Now, there are people calling in and saying, "Oh, I promise you that if I go in the tanning bed, it works the best ever." And the answer is yes, it does sometimes, but more often than not, tanning bed light needs some help with other medications. So I tend to tell people if the tanning bed works great for you, go ahead, but do know you are setting yourself up for skin cancer, wrinkles, brown spots and things like that. So if you have to, I say just make sure that you have a dermatologist watching you for skin cancers.

Light therapy does have risks, but we monitor how much light, and the intensity of light you are getting very carefully so you don't usually get burned, although you can. The risk of that is skin cancer, but actually they seem not to be as problematic as they are with true sunlight. So, yes, it's there, but we very carefully measure the amount of "sun" you get, and we then drop it back as your psoriasis starts getting better. You have always got to ask yourself what are the treatment's side effects?

The Most Commonly Used Pills for Psoriasis

Dr. Miller:
The most common pill that we use is called methotrexate, which is actually a chemotherapy medicine. In high doses in your veins it kills cancer; low doses by mouth once a week do very well to "knock psoriasis down." It does have some side effects too. It can affect the liver, and you really shouldn't drink any alcohol with it because methotrexate plus alcohol can really damage your liver. But it's usually a very effective treatment for psoriasis.

There is another pill called Soriatane (acitretin) which is actually vitamin A, a super-duper vitamin A that works very well. Actually one of those medicines that we first found out that modulates the immune system is called cyclosporine (Sandimmune, Neoral), really a great treatment for psoriasis, but it has a lot of side effects. It can affect the kidneys and blood pressure, so you always have to be watching them, but it works very well. And then there are several others too.

Benefits and Risks of Biologicals for Treating Psoriasis

Dr. Miller:
And then we think about the biologicals. The biologicals are a group of drugs that are injected because they are very big proteins that you are just not going to absorb if you take it by a pill. There are two types of those. The main ones are called TNF (tumor necrosis factor) inhibitors, and those are the drugs called Enbrel (etanercept), Humira (adalimumab), and Remicade (infliximab).

And then the other group is the T-cell drugs called Raptiva (efalizumab) and Amevive (alefacept), and both of those are very effective for psoriasis, some more than others certainly, and they do all have to be injected. Most of them we teach you to inject at home. They are like little diabetic shots. They barely go under the skin. They affect the immune system. So if you are going to decrease the immune system, you might have a little bit higher risk of infection, although it's not a huge problem. But we do warn people not to be around really sick people and to let us know if they get sick. Those are the main things that these drugs do. There are some other unexpected side effects with some them, but for the most part they are very effective.

With TNF inhibitors the risk of infection is big. And actually they tend to bring out multiple sclerosis, which is a neurological condition. It's very rare, but if you have a family or personal history of multiple sclerosis, you probably should not be treated with a TNF inhibitor. Also, very rarely they can affect the heart, so if you have a bad heart you should really think twice about using a drug like that.

For T-cell agents like Raptiva, again there is a risk of infection, and they can sometimes decrease platelets, so your doctor will be monitoring your blood periodically on that medicine.

Then there is a whole question of whether or not these drugs increase your risk of getting a cancer. Essentially, as we get more and more experienced with them, we have come to understand that most cancers do not seem to be induced, so we are not seeing a lot of your regular cancers with these drugs. So it's looks very safe. A cancer we do worry about is called lymphoma, and that's a cancer of the lymph nodes. And it actually turns out people with psoriasis, rheumatoid arthritis, Crohn's disease - any of these autoimmune diseases - have a higher risk than an average person of getting a lymphoma anyway. So the TNF inhibitors might increase that risk a little more. It's not a lot, if that's the case, but if you are on a drug like that, you will notice your doctor checks your lymph nodes when you come in just to make sure that nothing like that is happening.

How Doctors Decide on Which Psoriasis Treatments Are Right for You

Dr. Miller:
You have to take each patient individually, and if they have got two psoriasis spots on their elbows, then you are really going to stay with just topical treatments, or the injectable treatment. After that you have to consider a lot of things. So if a patient lives very close to a phototherapy center, the main risk for that is getting sunburned and perhaps a risk of skin cancer later, and if you are somebody who doesn't have a prominent history of skin cancers, that may be the best way to go. If you are somebody who lives a long way away from a treatment center, that's when you have to be thinking about some of these other treatments. So you have to take everything individually and talk to the individual patient about it.

I always start with the treatment that I think is going to work the best with the fewest side effects, and I talk it over with the patient. If somebody has psoriasis head to toe, they can't put cream on head to toe and expect that to work. So I might add some topical treatment to it, but I will discuss with them something that's a little bit more aggressive, like light treatment and/or some of these other medications.

I will also usually talk to the patient to see what their lifestyle is. Some people just cannot give themselves a shot or don't want anybody to give them a shot. So then we work hard with the oral medications. Some people really don't want to go for the latest and greatest, and that's where the injectables come in.

I hate to bring up insurance, but some of these biological medications are expensive, and so unless you are Bill Gates owning Microsoft, you have got to have insurance covering them. And it varies with where you are in the country as to what insurance will cover. Sometimes they insist that you have tried methotrexate or phototherapy first before they will let you use one of those biological medications.

Psoriasis Treatment Options When Others Have Failed

Dr. Miller:
If a patient is not responding, that's when you start with combination therapies, and you may not have even tried all the standard treatments with that. If I have somebody who has a lot of psoriasis, and it's really a problem for them, or even if they just have some psoriasis on their hands and feet, one drug that seems to have a niche with hand and foot disease is the biological agent Raptiva. So you start them on Raptiva. First of all, you need to give it some time. I really try to help people understand we have to give it 12 weeks to work, and then if we see absolutely no improvement, we can either change or we can add a medication to that.

And we often will use methotrexate, the pill, plus, say, Enbrel or Raptiva. I really like the drug Soriatane, which is a vitamin A derivative. It doesn't decrease the immune system at all, so it's great to use with one of these biologicals, especially to help get rid of psoriasis without adding to the immune suppression. And we might add light to it.

You can also push the dose. Most of the time Enbrel, for example, we inject it once a week. Sometimes if that's not working, we will go up to twice a week. So you have a lot of different options.

It really is safe to combine these medications, but you do have to be monitored. I tell people, "If you get an infection, if it seems like you are getting sick, let me know." I really keep track of my patients who need blood work, and if they are doing great and don't want to come in, I make them come in because we have to keep watching them.

It's rare that we tell patients there's nothing more we can do for them. Unfortunately it does happen on occasion. It's usually less because we have run out of drugs than for some other reason. Unfortunately sometimes insurance just won't cover things. And then there are those people who have other health problems that make it so we can't use any of the other medications. Otherwise your doctor can be very creative about these various combination medicines, and you usually can find the one that's right for that patient.

Promising New Drugs for Psoriasis

Dr. Miller:
If you have to have psoriasis, this is not a bad time to have it because there are a lot of drugs coming down the research pipeline. In particular, this summer three are going to be approved. Not all specifically for psoriasis, but we have reason to think that they are going to work very well. There are two brand new in the category of the TNF inhibitors, so Enbrel and Humira and Remicade are going to be joined by two different medications that will actually act longer and seem to be stronger. They are going to be releasing one of them for rheumatoid arthritis. The other one is going to be for psoriasis.

The other one that's really exciting is another injectable that works completely differently than anything we have so far. It doesn't really have a name yet, but it inhibits two cytokines, which are parts of the immune system that affect T cells and in a different way than any of the others that we have available right now. So that's very exciting. They are working on some pills that are new that will work on this, too. So I say to some patients, "We've tried everything right now, but in six months something else is coming, so let's just hold on."

More Information About Psoriasis

If you'd like to know more about treatments for psoriasis, listen to the entire webcast of How to Treat the Toughest Psoriasis and hear how our Dr. Miller answered questions from the audience.

For more information on psoriasis, check out these HealthTalk resources:

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